Integrating Participants as Partners in Research Governance and Operations: An Approach from the ALL of US Research Program Engagement Core

Authors

• Catherine Hammack-Aviran, Belmont University College of LawFollow
• Alecia Malin Fair
• Melinda Aldrich
• Jennifer Richmond
• Selena McCoy Carpenter
• Karriem S. Watson
• Elizabeth G. Cohn
• Consuelo Hopkins Wilkins

Document Type

Article

Publication Date

2023

Abstract

This article describes efforts within the All of Us Research Program to integrate research participants into governance and operational decision-making roles. Through intentional engagement strategies, participants were recruited to serve on steering and executive committees and contribute to program oversight. Evaluation of the initiative included a survey measuring researcher readiness for participant engagement across the consortium. Over a three-year period, survey responses demonstrated increased support for participant involvement and recognition of the value of participant perspectives in shaping research priorities. Although some reservations remained regarding equal decision-making authority, the findings suggest that structured participant engagement can strengthen trust, enhance transparency, and promote more inclusive governance in large-scale biomedical research initiatives.

Recommended Citation

Catherine Hammack-Aviran et al. Integrating participants as partners in research governance and operations: an approach from the All of US Research Program Engagement Core.  BMJ Open, 2023 Nov 27;13(11).